This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.

Friday, March 23, 2007

The Torture Begins

On Tuesday morning we will be taking our sleeping boy and putting him in the car at 6:30 in the morning to driving to Richmond to see our AV therapist. What kind of crazy therapist makes you get up that early for a session, you ask? She's not crazy, she's wonderful. You see, Noah and I are booked solid for the next 8 weeks from 9-4:30, so 7:30 am is the only time I have available for learning to listen and speak. Why, you ask? We will soon be day patients at Children's Hospital. Our goal? Learning to eat. As a fun way to start that goal, on Tuesday morning our new feeding therapist will lock Noah and I in a room with all sorts of foods that I know he won't be interested in. She said she doesn't expect him to eat them, she just wants to find out how he goes about not eating them. Does he gag? Vomit? Push the food away? Scream and cry? Yes, to all. Why would I put my small child under such diress? Because if I don't we're getting a g-tube. We don't want a g-tube, so instead we're going to feeding boot camp. Every day Noah will have 4 feeding sessions with our feeding therapist and a feeding technician (I'll let you know what this is next week). Twice a week he'll be weighed, and if he doesn't gain appropriately there'll be a public flogging (they're kidding about that, right?). Once a week we'll meet with our feeding team (therapists, nutritionist, psychologist, etc.), and after 8 weeks they'll let us loose in the world a little fatter (just Noah, not me) and with some new feeding skills. We hope.

2 comments:

Hi,I saw a comment you left on the neo doc's blog and just had to visit your page. What you said about valuing life even in the midst of disabilities really connected me to your story. I also had a micro preemie at 23 weeks who is now deafblind, due to the prematurity. She also has cp, seizures, major feeding problems-gtube and a shunt. It is hard being her mom, but she is so valued in our family! Her life is so precious and her presence would be extraordinarily missed if she had died.I like your blog, and Noah is a cutie pie!feel free to visit my blog.Pattypattyjob

Oh, I am so excited about your trip to the feeding clinic... is that strange? Anyway, I hope they can help you guys out!!! Everytime I sit down to feed Margaret, I think about Noah. (and I knew you would understand how absolutely thrilled I was when she ate her chicken the other day... thus, all the pics on my blog.)

About Me

Prematurity is a tragedy. Preemies face many more issues than full term babies, and micropreemies like Noah rarely escape without some sort of long term consequences. Life will always be more of a challenge for Noah, and more of a challenge for me because he came into my life. That just means that we'll develop strong characters along the way - something that's sorely lacking in our society today. Raising a micropreemie isn't easy. I wouldn't have picked it for myself if given a choice. No one would. But Noah has given me the ability to be thankful for every little thing in my life and for that I am eternally grateful.